Friday 27 May 2016
Moving on
All future blog postings will be at www.jonstamford.com - please redirect your browser there.
Tuesday 9 June 2015
TEATIME
No matter how busy we are in the office, there's always time for tea. Somebody will finish a phone call, send an e-mail, sign a cheque and decide that this is a convenient moment for tea. There is an almost Zen like quality to the moment, similar to the tachi-ai in sumo, when, from that tiny moment of stillness, pandemonium erupts. Well, I say pandemonium but what I really mean is flickering of interest.
And in an office largely full of girls, I should immediately clarify that the point of similarity is that Zen-like stillness, not the imminent collision of mountains of flesh. That's how misunderstandings happen.
I think I have probably rather overstretched this simile to be honest. I'd probably better disguise their names as well. Better safe than sorry.
Anyway, I digress. Someone calls "tea anyone?" and pandemonium erupts. Sorry, mild interest. Funnily enough, the words "mild flicker of interest" are not usually followed by the word "erupts". Sometimes the English language can be strangely restrictive.
Where was I? Oh yes, tea. I don't usually come into the office more than a day a week. Mostly I work from home and, in a domestic context, tea time largely fails to reproduce that frisson of excitement found in the office. It takes on the quality more of a refuelling stop. A chance to take on fluid and nothing more. But in the office, there is always the unwritten possibility of more. If there has been a board meeting in the morning, or a committee, or working party, there is always the promise of flapjacks, millionaire shortbread or even, if we have been visited by knights of the realm, an outside chance of Jaffa cakes.
But irrespective of the circumstances, there is the business of tea itself. It would be easy if everyone drank exactly the same formulation of tea -- say one tea bag, milk and 1 teaspoon of sugar. That would be easy. Predictably, in an office full of larger-than-life characters (no, girls, I mean metaphorically -- not a sumo reference), everyone takes their tea slightly differently.
Of course, being in the office together full-time, each knows the others' preferences. They barely have to nod to each other. It's the kind of unwritten communication that you find in a flange of gorillas or a congress of baboons. Again, I'm not likening the girls in the office to groups of primates. They may share make-up tips but I have never seen them picking insects off each other.
Anyway, as a less frequent visitor to the flange, sorry office, I find myself struggling to remember who takes what in their tea. Or even who takes tea. In the space of 10 yards, from the office door to the kitchen, I have forgotten not only how people wanted their tea but also who wanted tea at all. On a bad day I may even forget who is in the office.
To resolve this, I hit on a master plan. Being by nature a scientist, I would prepare a crib sheet of everyone's tea preferences (and coffee for that matter) and put this in the kitchen, where needed. If Ellen wanted coffee (she doesn't drink tea), I would simply check the appropriate column, add a level teaspoon of coffee powder and pour a splash of milk into the cup. Or if Lisa wanted tea, she would prefer it without milk but with a single sugar.
Foolproof, I think you'll agree. And I could hardly wait until 3 PM to put my system to the test. Finally, there would be no barely veiled looks of disappointment from the team when presented with unsolicited or incorrectly prepared beverages. Nothing was left to chance. I had all their preferences down in black-and-white. This would be a triumph of science over chaos.
Except that on this particular occasion, Ellen elected, for the first time in a decade, to take tea instead of coffee. Hannah refused to submit to my coffee formula by insisting that she would only drink real coffee and, as for tea, would only touch a formulation she had encountered somewhere in the far east. And Lisa's tea went to Sam, since I had somehow failed to notice she had left the office three hours earlier. Observation is not my strong suit.
Still it's not without benefits -- it's highly unlikely I will ever be asked to make the tea again. Silver linings and all that.
And in an office largely full of girls, I should immediately clarify that the point of similarity is that Zen-like stillness, not the imminent collision of mountains of flesh. That's how misunderstandings happen.
I think I have probably rather overstretched this simile to be honest. I'd probably better disguise their names as well. Better safe than sorry.
Anyway, I digress. Someone calls "tea anyone?" and pandemonium erupts. Sorry, mild interest. Funnily enough, the words "mild flicker of interest" are not usually followed by the word "erupts". Sometimes the English language can be strangely restrictive.
Where was I? Oh yes, tea. I don't usually come into the office more than a day a week. Mostly I work from home and, in a domestic context, tea time largely fails to reproduce that frisson of excitement found in the office. It takes on the quality more of a refuelling stop. A chance to take on fluid and nothing more. But in the office, there is always the unwritten possibility of more. If there has been a board meeting in the morning, or a committee, or working party, there is always the promise of flapjacks, millionaire shortbread or even, if we have been visited by knights of the realm, an outside chance of Jaffa cakes.
But irrespective of the circumstances, there is the business of tea itself. It would be easy if everyone drank exactly the same formulation of tea -- say one tea bag, milk and 1 teaspoon of sugar. That would be easy. Predictably, in an office full of larger-than-life characters (no, girls, I mean metaphorically -- not a sumo reference), everyone takes their tea slightly differently.
Of course, being in the office together full-time, each knows the others' preferences. They barely have to nod to each other. It's the kind of unwritten communication that you find in a flange of gorillas or a congress of baboons. Again, I'm not likening the girls in the office to groups of primates. They may share make-up tips but I have never seen them picking insects off each other.
Anyway, as a less frequent visitor to the flange, sorry office, I find myself struggling to remember who takes what in their tea. Or even who takes tea. In the space of 10 yards, from the office door to the kitchen, I have forgotten not only how people wanted their tea but also who wanted tea at all. On a bad day I may even forget who is in the office.
To resolve this, I hit on a master plan. Being by nature a scientist, I would prepare a crib sheet of everyone's tea preferences (and coffee for that matter) and put this in the kitchen, where needed. If Ellen wanted coffee (she doesn't drink tea), I would simply check the appropriate column, add a level teaspoon of coffee powder and pour a splash of milk into the cup. Or if Lisa wanted tea, she would prefer it without milk but with a single sugar.
Foolproof, I think you'll agree. And I could hardly wait until 3 PM to put my system to the test. Finally, there would be no barely veiled looks of disappointment from the team when presented with unsolicited or incorrectly prepared beverages. Nothing was left to chance. I had all their preferences down in black-and-white. This would be a triumph of science over chaos.
Except that on this particular occasion, Ellen elected, for the first time in a decade, to take tea instead of coffee. Hannah refused to submit to my coffee formula by insisting that she would only drink real coffee and, as for tea, would only touch a formulation she had encountered somewhere in the far east. And Lisa's tea went to Sam, since I had somehow failed to notice she had left the office three hours earlier. Observation is not my strong suit.
Still it's not without benefits -- it's highly unlikely I will ever be asked to make the tea again. Silver linings and all that.
Thursday 4 June 2015
DESPERATION OR INSPIRATION
When you are newly diagnosed with Parkinson's, you find yourself on an information rollercoaster. You are inundated with information, weighed down with websites, pummelled by pamphlets and awash with advice. Everyone seems determined to tell you what you should do, when you should do it and what will happen if you don't (or sometimes even if you do). We talk of Parkinson's as a journey and, just as we're slipping on our metaphorical trainers, people are hastening to tell us about the rigours of the journey and the toll it will take. Whether they believe themselves to be helpful or not, there seems to be a need among some of the gloomier 'old hands' to make you share their despondency, their apathy and loss of spirit.
For these people, all life was sucked out of their bodies by the diagnosis. They sit quietly in a corner of God's waiting room waiting for their appointment. These are people who never get beyond the 'why me' question, people whose sense of victimisation by the illness gnaws at their being. These are people for whom wallowing in self-pity is the norm,
Misery attracts misery. The glums are never happier than when sharing their wealth of experience with a Parkinson's rookie, watching cannibalistically as they draw the life force out of their victim. Some don't even realise they're doing it. Others take some perverted comfort in dragging people down rather than lifting them up.
Parkinson's is like that. As a good friend of mine explained, the same thing that makes us frail also gives us power. The value of that experience is incalculable. Our narrative of the illness can be used for good or bad. We can do irreparable harm or inestimable good. We can become dementors or beacons. And these are not predetermined paths, the unalterable expression of Parkinson's on the human psyche.
These are choices. We have the capacity, when faced with Parkinson's, to avert our gaze and cower, beaten, in a corner. It's the soft option, passive and victimised. Or we can stand tall, stare this intruder in the eye and decide to do our best. Not just for ourselves, but also for others.
Parkinson's gives us that power. And it does so in direct proportion to our experience. The longer we have had Parkinson's, the more valuable and credible is our experience of the condition and the more sought-after is our opinion. That is power. But with that power comes responsibility. We can wield that strength for good or bad.
I've been lucky. Although my early experience of Parkinson's, and people with Parkinson's, was dispiriting, it was not terminally disabling. Among the many dementors, somehow I found, or was attracted to, people whose indomitable spirit fought back against the condition -- people who, as the condition took more and more from them, seemed to find more to give. People who would not submit to the condition but resisted with fearless determination. People who come from all walks of life -- a teacher from Tennessee, a surveyor from Hertfordshire, a boxer from Norfolk, a nurse from New Zealand and more.
Parkinson's is tough, certainly. It is, as Michael J Fox once memorably said 'the gift that keeps on taking'. It will make demands on you as it progresses and how you face those demands will say much about you as a person. I have been fortunate to have met people who, in the words of Val Doonican (and I can't quite believe that I am quoting the prince of knitwear), " walk tall, walk straight and look the world right in the eye".
For these people, all life was sucked out of their bodies by the diagnosis. They sit quietly in a corner of God's waiting room waiting for their appointment. These are people who never get beyond the 'why me' question, people whose sense of victimisation by the illness gnaws at their being. These are people for whom wallowing in self-pity is the norm,
Misery attracts misery. The glums are never happier than when sharing their wealth of experience with a Parkinson's rookie, watching cannibalistically as they draw the life force out of their victim. Some don't even realise they're doing it. Others take some perverted comfort in dragging people down rather than lifting them up.
Parkinson's is like that. As a good friend of mine explained, the same thing that makes us frail also gives us power. The value of that experience is incalculable. Our narrative of the illness can be used for good or bad. We can do irreparable harm or inestimable good. We can become dementors or beacons. And these are not predetermined paths, the unalterable expression of Parkinson's on the human psyche.
These are choices. We have the capacity, when faced with Parkinson's, to avert our gaze and cower, beaten, in a corner. It's the soft option, passive and victimised. Or we can stand tall, stare this intruder in the eye and decide to do our best. Not just for ourselves, but also for others.
Parkinson's gives us that power. And it does so in direct proportion to our experience. The longer we have had Parkinson's, the more valuable and credible is our experience of the condition and the more sought-after is our opinion. That is power. But with that power comes responsibility. We can wield that strength for good or bad.
I've been lucky. Although my early experience of Parkinson's, and people with Parkinson's, was dispiriting, it was not terminally disabling. Among the many dementors, somehow I found, or was attracted to, people whose indomitable spirit fought back against the condition -- people who, as the condition took more and more from them, seemed to find more to give. People who would not submit to the condition but resisted with fearless determination. People who come from all walks of life -- a teacher from Tennessee, a surveyor from Hertfordshire, a boxer from Norfolk, a nurse from New Zealand and more.
Parkinson's is tough, certainly. It is, as Michael J Fox once memorably said 'the gift that keeps on taking'. It will make demands on you as it progresses and how you face those demands will say much about you as a person. I have been fortunate to have met people who, in the words of Val Doonican (and I can't quite believe that I am quoting the prince of knitwear), " walk tall, walk straight and look the world right in the eye".
Thursday 7 May 2015
VOTE VOTE VOTE
This election is complicated by the additional presence of UKIP (United Kingdom Independence party). UKIP, for the benefit of overseas friends, is essentially a single issue party. Normally such a thing could be swiftly discounted but, such is the potency of that message to some socioeconomic strata, there is a realistic possibility, if the papers are to be believed, that they may hold the balance of power in a hung parliament. There is even the spectre, however remote, that they might be elected.
I suspect tonight will be an all nighter, watching as the results come in on the drama unfolds. Although we have never had proportional representation, the UK prides itself that its "first past the post" version of democracy allows for strong government and prevents electoral extremism. Today will be the toughest possible test of that tenet.
Although only a small island in northern Europe, the UK remains disproportionately influential on a world stage and we will not be deluding ourselves when we say that the eyes of the political world will be on us today. Our position in Europe and the world, indeed our credibility as a democratic country, is at stake. It is not melodramatic to say that the future of world democracy hangs in some way on the actions we, the voters, take today.
Today is the day for serious decisions. We have a responsibility to ourselves, our families and the family of nations to use our vote wisely. Whether we vote for the status quo, a step into the unknown or any point in between, we should do what we have to do with our heads held high. We may look back on today, either with hope or fear, as the day which changed the world. It's that important.
Thursday 14 August 2014
A memorable road trip
In 1986, not long after I had received my Ph.D., I was working in Indiana as a postdoctoral student. During that summer, I was asked to present a lecture at the University of Kansas. For more reasons than one that turned out to be a memorable trip. Here's what I wrote about it a few years ago.
This account is taken from my first book SLICE OF LIFE, obtainable from Amazon. http://www.amazon.co.uk/Jon-Stamford/e/B00JBEPPY2/ref=sr_tc_2_0?qid=1408005163&sr=1-2-ent
==================
Two decades ago, I worked in Indiana, part of America’s almost mythical Midwest. Bloomington, a college town and home of the Hoosiers was little more than a small dab of green paint on a huge agricultural canvas. It was high summer and rain hadn’t fallen in nearly six months. Fields, normally, shoulder-high and plump with corn, were dry, bleached flats that stretched out to infinity. When the tractors weren’t shimmering in the heat on the open plains, they raised dusty swirls, twists and eddies that glided silently like spectral figures over the distant horizon. Television talked of The Dust Bowl, and those who lived through the 1930s spoke of the similarities and drew anxious parallels. This was the land of Steinbeck, of Tom Joad and the Grapes of Wrath.
Along with friends, I was invited to speak at a conference in Kansas, 500 miles away. We could have flown but chose to drive, in a rattling hired sedan without air conditioning, hour after soporific hour, on arrow-straight undulating roads strung with telegraph poles, the monotony broken only by occasional animal carcasses or rusted flatbeds, abandoned where they had fallen. "Welcome to nowhere" read the faded graffiti on one decaying Chevy. Through Vincennes, St Louis, Columbia and Independence, and on towards Lawrence on Interstate 70, we played away the hours with tapes of Tom Waits, as we gradually assumed the manners and personae of Kerouac, Cassady and Ginsberg. We left the interstate, with its honking horns, and set off on a two-lane blacktop. Apart from occasional trucks, we had the road to ourselves
Night fell swiftly in August on the summer plains and, as the stars filled that ink-black prairie sky, the fuel gauge gradually slipped into the red, and we thumbed the map for our location. Nowhere - just as the graffiti had said. As Joe tapped the fuel gauge, we reached another brow in the road. A flickering sign in the distance read "Food. Gas" with that laconic precision so prevalent throughout the plains states. As the car coughed, we pulled in to a tiny one-pump gas station. It felt like a step back in time. On the far side of the road was a chalk-white steer skull on a pole. While Joe fuelled the car, Lesley and I stretched our legs, the air still hot from the day. A man in faded overalls and a grease-stained baseball cap emerged from a tiny shack-shop of breeze blocks with a tin roof, kicking the dust as he walked. "Do you have food?" I asked. There was the long pause of a man used to spending his words carefully. "Got all you need there" he said, nodding to the shop "Annie Mae’ll help you"
A moth fluttered behind a dirty cracked window next to an antique Coke machine that groaned and burped as its refrigerator fought hopelessly against the heat. A small bell tinkled as I opened the door. Somewhere in the distance the long prairie wail of a goods train pierced the night’s silence. I picked Monterey Jack cheese, ham, sesame rolls and rootbeer and placed them on the cracked red Formica counter next to a small tarnished brass bell. As I reached for the bell, there was a rustle of the fly curtain at the back of the shop. "Hello" I called. "Be with you" said a girl’s voice. "Annie Mae?" I asked and she smiled, all freckles and dimples, as she totted up the groceries on the corner of a newspaper in her childish hand. She licked the pencil tip then pronounced "That be five dollars and forty three cents". She held up her open hand to signal ‘five’ and giggled. I saw she was missing a thumb. "Funny girl" I said. She laughed.
I realised my wallet was missing the moment I reached into my trousers and slapped my pockets in the reflex movements of a man unexpectedly penniless. "Vincennes" I said to myself, as I remembered leaving it on the counter of the Dairy Queen, where we had stopped for cones in the late afternoon. Five hours earlier and two hundred miles back on the Interstate. "I have money in the car" I said in explanation. "Back in a minute".
"Well we need to find a bank in the morning" said Lesley "cos I've just spent our last fifteen bucks on gas". Like royalty, Joe never carried money, always relying on Lesley. I explained about the ice cream parlour in Vincennes.
"Annie Mae, I have no money. I'm really sorry" I stuttered and began to put the groceries back. Even in the half light of the shop, my beetroot red face must have been obvious. "It's okay" she said "take the food. You can pay on your way back".
I protested. But Annie Mae would have none of it. "Just don't tell my pop" she winked. And giggled.
As we spluttered out onto the highway again and gathered speed, I told Joe and Lesley about Annie Mae and the food. "Real cute" said Lesley. "Real dumb" said Joe, sparking a row between the two.
We were in Lawrence for two days. Two days hot enough to fry eggs on the bonnet of the car. I did the lecture, with voice barely audible over the air conditioning, my slides buckling in the heat from the projector. I told the listeners of dopamine receptors and the nigrostriatal pathway, of dysregulation and dopamine transporters. Everything I knew about Parkinson’s (I used to be a neuroscientist, remember). There were questions too, mostly interested in why an Englishman was in Kansas. "Just following the Yellow Brick Road" I said until it wasn’t funny any more. I was shown around the labs, invited to dinner with the faculty members, and guest of honour at a lake party on a bright yellow pontoon boat where we ate slices of watermelon washed down with Coors from the cooler.
Thursday came, muffins and ham for breakfast and then on the road to Nowhere. Or wherever it was that we had stopped for gas and food on Monday night. On a two to one majority, we persuaded Joe to drive back to the garage and give Annie Mae her five dollars and forty three cents, all in shiny new coins. As Joe grumbled and muttered, we looked out for the garage. Mile after mile of dusty emptiness.
Then I saw the cattle skull. We pulled over and I picked up the envelope with the money. The garage looked different. They must have replaced the aged single pump. Two fancy new Texaco pumps stood there.
I looked around. Where was the shop? The breezeblock hut was nowhere. Instead a small glass fronted shop with plastic fittings occupied the space. A middle-aged man emerged. "Need gas?" he asked. "No" I said "I need to give some money to the girl".
He screwed up his eyes. "What girl? Ain’t no girl here".
"Annie Mae" I said "Freckles? Missing a thumb".
He looked down and flicked some cigarette ash off his overalls. "She's not here" he said quietly. A long pause. "She’ll come around sometimes. When there are strangers mostly".
I waited a moment, but no further explanation was forthcoming. "So where is she now?" I asked.
He nodded in the direction of the corn field opposite. "She bin in the field some twenty years now". His voice faltered. "Buried her there the night her pop brought her in, knocked down by a truck. Folks left their food behind so she ran across the road after them. She was kind like that. Always looking to help. Buried her pop a week later. Wouldn't eat or drink. His little angel she was. Called her Angel Annie somedays".
My mouth was dry and, although he kept talking, I heard nothing else he said as I crossed the road into the field, the corn rustling in the dusty breeze. I reached into my envelope for the five dollars and forty three cents. Shiny new coins glinting in the sun. With a bellow that echoed off the distant grain elevators, I hurled them as far as I could and stood for a moment listening to their pitter patter as they fell among the corn. I turned back towards the car.
Tuesday 8 July 2014
Opening the vault
As many of you know, SLICE OF LIFE ceased to be an active, regularly updated blog in March 2014. Nonetheless many of you have generously said that you enjoyed it and want to reread it.
There are essentially two options. The first is to buy the books. More than four years of blog can be found in the books on the left. In order of publication (and chronological order), they are SLICE OF LIFE, COMING TO TERMS, A PIECE OF MY MIND and finally HEADS OR TALES. The books are available direct from the publisher (www.lulu.com) or from Amazon. They cost around £10 each and, if it helps you to decide, half of the royalties go to The Cure Parkinson's Trust, a charity devoted to finding a cure for this illness.
But for many, dipping into the blog is all you want. And with that in mind, I have decided to publish a random blog from the archive each week. Depending on time and suchlike, I may update each posting with new information, comments, jokes or whatever springs to mind. If nothing else, they will be a nostalgic ramble through past moments. And although Slice of Life is essentially retired, just to keep you on your toes, I might even slip in the occasional new posting.
Does that sound like a plan?
There are essentially two options. The first is to buy the books. More than four years of blog can be found in the books on the left. In order of publication (and chronological order), they are SLICE OF LIFE, COMING TO TERMS, A PIECE OF MY MIND and finally HEADS OR TALES. The books are available direct from the publisher (www.lulu.com) or from Amazon. They cost around £10 each and, if it helps you to decide, half of the royalties go to The Cure Parkinson's Trust, a charity devoted to finding a cure for this illness.
But for many, dipping into the blog is all you want. And with that in mind, I have decided to publish a random blog from the archive each week. Depending on time and suchlike, I may update each posting with new information, comments, jokes or whatever springs to mind. If nothing else, they will be a nostalgic ramble through past moments. And although Slice of Life is essentially retired, just to keep you on your toes, I might even slip in the occasional new posting.
Does that sound like a plan?
Monday 17 March 2014
So long
When I started writing Slice of Life, I never seriously imagined that I would write as many words as I have. Nor indeed that anyone would wish to read them. It was intended as a bit of fun, a writing exercise in part, and a way of coming to terms with a life that was to be changed by Parkinson's.
I resolved from the first that this would not be a detailed medical appraisal of life with Parkinson's. Nor would it chart family life in isolation from the condition. I intended it to be a reflection of my way of dealing with these things, light-hearted and positive. And for the most part I would like to think that I have succeeded in those objectives. I don't believe in dwelling on those things that one cannot change. I do believe in channelling one's energies into those arenas where an impact can be made.
A lot has changed in the five years since I started writing. In 2009, Catherine and Alice were teenagers, getting to grips with GCSEs and A-levels. Family life was boisterous and brash, Hogarthian almost. Mealtimes were rowdy and stimulating as everyone chattered about their day. Problems were aired, solved and softened. The house was littered with musical instruments, cricket bats, homework and clothes. Bedlam.
And my Parkinson's, barely two years post diagnosis and no more than an irritating tremor, barely impinged. We joked about spaghetti and soup, shaking cocktails and so on. We knew all the jokes and in many ways, it was little more than a joke.
I was Dad. Shaky Dad I grant you. But still untouched by the illness.
But that's the thing with Parkinson's. It's like grandmother's footsteps. You turn your back for a fraction of a second and, in a thousand little ways, it creeps up on you. You can't turn your back for a minute. But if you don't turn your back on the illness, you find yourself turning your back on life. The desire to fight the illness becomes all-consuming. The desire to resist each new symptom, each new advance of the frontline, takes over your life. Not overnight. But gradually and by degrees.
Fighting Parkinson's is a war. Keeping the family together is another. We shouldn't be surprised that this battlefield is littered with casualties. Over the seven years since I was diagnosed with Parkinson's, I have met wonderful people -- good men and true -- destroyed by an inability to fight on two fronts. I have seen people keep symptoms at bay only at the expense of the destruction of their families. I have seen men walk away from their families, unable to share the journey any more. And there are others who remain doting fathers and loyal husbands to their families, who sob themselves to sleep at night, dropping the mask only when alone.
The drugs don't help. Well, of course, they do. Before the advent of levodopa, there was next to nothing to treat Parkinson's. From diagnosis to death took around five years. If I had been born into the world 50 years earlier, and diagnosed in 1956, it would have been a different story. There would have been no blog to read. I would have lost the ability to write by 1958. I would not be able to feed myself by 1960. And in 1961, as the Beatles played at the Cavern Club, you would have laid me in my grave. I would not have seen my children grow up. I would not have seen them leave home. And their enduring memories of their father would have been a frozen, bedridden, hospitalised skeleton unable to feed himself. Not much of a legacy.
So yes, the drugs do help. I am alive today because they help. But there is a price to pay. Sure, I can still walk. Sometimes even run. And I can still feed myself. In fact, on the basis of my expanding girth, this is an area I have completely bossed. And my tremors are not yet disabling. All things considered, I am fighting the good fight against the Parkinson's. I have a lot to be thankful for. And believe me, I am truly thankful. In some ways, the blog and the books are my way of saying how thankful I am.
But sometimes Parkinson's takes you to places you don't want to go. It can make you into another person. Someone you don't recognise. Somebody you don't even like. It may even be a coping mechanism, a way of living with the illness, for all I know.
For the last five years, I have chronicled my life with Parkinson's. I have tried to be honest about the impact it has on my family. Time moves on, the illness moves on and, in many ways, the family moves on. The girls have now left home and Alex is absorbed with everything that being a 16-year-old boy entails. Mealtimes are quiet. He misses his sisters. I miss my daughters.
And I sometimes feel that I have spent so much time writing about family life that I have become an observer rather than a participant. Perhaps, in chronicling life, I have become detached from it. Will my children look back on this time and wonder who the imposter pretending to be Dad actually was. Seven years ago, fighting Parkinson's was my battle. And the blog was part of that battle.
Today things are different. I need to push the Parkinson's aside as much as I can. And that means that I need to stop writing about it. It's enough that I work in the field from nine till five. It needs to be held in perspective.
A year or so ago, Catherine made a remark.
"I like reading the blog, Dad. It's the only way I know what you're doing and thinking".
I laughed at the time. But it doesn't seem so funny now.
Thank you for reading this blog over the last five years. It won't be easy but it's time to put down the pen. My children deserve their father back.
I resolved from the first that this would not be a detailed medical appraisal of life with Parkinson's. Nor would it chart family life in isolation from the condition. I intended it to be a reflection of my way of dealing with these things, light-hearted and positive. And for the most part I would like to think that I have succeeded in those objectives. I don't believe in dwelling on those things that one cannot change. I do believe in channelling one's energies into those arenas where an impact can be made.
A lot has changed in the five years since I started writing. In 2009, Catherine and Alice were teenagers, getting to grips with GCSEs and A-levels. Family life was boisterous and brash, Hogarthian almost. Mealtimes were rowdy and stimulating as everyone chattered about their day. Problems were aired, solved and softened. The house was littered with musical instruments, cricket bats, homework and clothes. Bedlam.
And my Parkinson's, barely two years post diagnosis and no more than an irritating tremor, barely impinged. We joked about spaghetti and soup, shaking cocktails and so on. We knew all the jokes and in many ways, it was little more than a joke.
I was Dad. Shaky Dad I grant you. But still untouched by the illness.
But that's the thing with Parkinson's. It's like grandmother's footsteps. You turn your back for a fraction of a second and, in a thousand little ways, it creeps up on you. You can't turn your back for a minute. But if you don't turn your back on the illness, you find yourself turning your back on life. The desire to fight the illness becomes all-consuming. The desire to resist each new symptom, each new advance of the frontline, takes over your life. Not overnight. But gradually and by degrees.
Fighting Parkinson's is a war. Keeping the family together is another. We shouldn't be surprised that this battlefield is littered with casualties. Over the seven years since I was diagnosed with Parkinson's, I have met wonderful people -- good men and true -- destroyed by an inability to fight on two fronts. I have seen people keep symptoms at bay only at the expense of the destruction of their families. I have seen men walk away from their families, unable to share the journey any more. And there are others who remain doting fathers and loyal husbands to their families, who sob themselves to sleep at night, dropping the mask only when alone.
The drugs don't help. Well, of course, they do. Before the advent of levodopa, there was next to nothing to treat Parkinson's. From diagnosis to death took around five years. If I had been born into the world 50 years earlier, and diagnosed in 1956, it would have been a different story. There would have been no blog to read. I would have lost the ability to write by 1958. I would not be able to feed myself by 1960. And in 1961, as the Beatles played at the Cavern Club, you would have laid me in my grave. I would not have seen my children grow up. I would not have seen them leave home. And their enduring memories of their father would have been a frozen, bedridden, hospitalised skeleton unable to feed himself. Not much of a legacy.
So yes, the drugs do help. I am alive today because they help. But there is a price to pay. Sure, I can still walk. Sometimes even run. And I can still feed myself. In fact, on the basis of my expanding girth, this is an area I have completely bossed. And my tremors are not yet disabling. All things considered, I am fighting the good fight against the Parkinson's. I have a lot to be thankful for. And believe me, I am truly thankful. In some ways, the blog and the books are my way of saying how thankful I am.
But sometimes Parkinson's takes you to places you don't want to go. It can make you into another person. Someone you don't recognise. Somebody you don't even like. It may even be a coping mechanism, a way of living with the illness, for all I know.
For the last five years, I have chronicled my life with Parkinson's. I have tried to be honest about the impact it has on my family. Time moves on, the illness moves on and, in many ways, the family moves on. The girls have now left home and Alex is absorbed with everything that being a 16-year-old boy entails. Mealtimes are quiet. He misses his sisters. I miss my daughters.
And I sometimes feel that I have spent so much time writing about family life that I have become an observer rather than a participant. Perhaps, in chronicling life, I have become detached from it. Will my children look back on this time and wonder who the imposter pretending to be Dad actually was. Seven years ago, fighting Parkinson's was my battle. And the blog was part of that battle.
Today things are different. I need to push the Parkinson's aside as much as I can. And that means that I need to stop writing about it. It's enough that I work in the field from nine till five. It needs to be held in perspective.
A year or so ago, Catherine made a remark.
"I like reading the blog, Dad. It's the only way I know what you're doing and thinking".
I laughed at the time. But it doesn't seem so funny now.
Thank you for reading this blog over the last five years. It won't be easy but it's time to put down the pen. My children deserve their father back.
Subscribe to:
Posts (Atom)